Monday, 12 October 2015

Struggles of Singapore's ageing caregivers

Many are unaware of the challenges of caring for elderly family members
By Venessa Lee, The Sunday Times, 11 Oct 2015

In Singapore's ageing society, caring for an elderly loved one may become a reality for many people. But what happens when the caregivers themselves are getting older and more frail themselves?Longer lives mean many people have to cope with the problems of ageing not just in their charges, but also in themselves.Ageing caregivers have their own health concerns, such as chronic conditions like hypertension and diabetes, and worry about their future medical needs, says Ms Wang Jing, senior manager of counselling and coaching at Tsao Foundation's Hua Mei Centre for Successful Ageing.They may also have little strength to help their charges in daily activities, such as transferring them from beds to wheelchairs.Caregivers may not be aware of the challenges they face.Their responsibilities are 24/7, says Ms Wang. "They may not get enough rest as they need to be alert all the time, even during the night, if the care recipient needs the washroom or a cup of water."

Mr Kelvin Lim, chief of the social care division at the Agency for Integrated Care, says many caregivers see their duties as "a natural extension of their relationship", such as if they are the wife or the son.

"Sometimes they're not aware that their role is quite extensive as a nurse, personal assistant and someone who handles the finances. They tend to focus their energy on their loved one's well-being at the expense of themselves," he says, adding that one challenge is that caregivers can become isolated socially.

There are many caregivers who would rather not receive help, eldercare providers say.

"People generally want to provide care on their own, sometimes to the point of resisting help or thinking that the assistance can be given to others with more needs."To lighten the load of caregivers, Touch has asked neighbours to help one another and provides training for the more complicated aspects of care, such as changing urine catheters and inserting feeding tubes.

When caregivers are properly trained, they are less stressed and more able to enjoy the presence of their wards.

After all, "the quality of care is directly related to the caregiver's health and well-being", Mr Lee says.

Supporting siblings and mumFor almost all of her adult life, Madam Atika Bibi Mohammad Ismail, 69, has been a caregiver to her large family, some of whom have intellectual disabilities.

At one point, she took care of 10 people, including her four children and grandfather.

Now, she lives in a rental flat in Toa Payoh and cares for three people: her 87-year-old mother and two half-siblings.

While her half-brother has been formally diagnosed, family members think her half-sister and mother also have intellectual disabilities.

Her mother, Madam Peer Mohamed Patamah Beebe, had seven children from two marriages. Viewed by relatives as being "simple-minded", she had not been able to care for them and hence some of her children were put in a care home.

Madam Atika was from her mother's first marriage and was taken care of by her maternal grandmother.

When she was married in her 20s, she took three of her half-siblings out of institutionalised care to be with her family.

She says in Tamil: "My grandmother, who took care of me, told me, 'There's no one looking after them. When you're grown up and in a stable situation, take them back.'"

When a relative taking care of her mother died 15 years ago, Madam Atika also became her full-time caregiver.

Her half-brother, Mr Abdul Seram, spends the day at their home after attending a workshop at the voluntary welfare organisation Minds (Movement for the Intellectually Disabled of Singapore).

There, he learns to fold towels and other skills related to job training. At night, he returns to his own three-room Housing Board flat in Bishan.

His sister, Ms Alimah, goes to Xin Yuan Community Care three times a week for group exercise. She sometimes gets food rations such as rice and instant noodles from there.

Madam Patamah gets medical consultations at home provided by Happee Hearts Movement, a non-profit organisation that serves people with intellectual disabilities.

Madam Atika has four children, who all live apart from her. Her husband, a garbage collector, died 14 years ago. Her second child, Madam Jamila Mustaffa, 52, is a senior social worker at Minds and helped as a translator during the interview.

As a child growing up in a kampung near Telok Blangah, Madam Jamila recalls seeing her mother teach her half-siblings basic tasks such as brushing their teeth and putting on their clothes.

There was "never enough" during her childhood, when food was shared and meat a luxury, she says. The children had to start working young, like she did at the age of 15 as an office administrator.

Madam Jamila, who lost her left hand in a childhood accident, adds that the "caring environment" at home played a role in her eventual decision to work in the social service sector, where she has more than 20 years of experience.

It is only in recent years that Madam Atika has felt the strain of being a caregiver. She suffers from asthma and knee pain as well as occasional dizziness and shortness of breath.

She starts the day at 5.30am, when she sometimes makes traditional South Indian food such as putu mayam or thosai from scratch for breakfast. She also cooks lunch and dinner and does the housework.

Ms Alimah helps with chores such as washing the dishes and sweeping the floor, while Mr Abdul Seram accompanies her to the market on Saturdays.

As all of them are ageing, health is a concern. Madam Patamah has arthritis that affects her mobility and Mr Abdul Seram has diabetes, while Ms Alimah had cataracts which were removed last year.

Madam Jamila and her 49-year-old sister, a baker who lives in Perth, Australia, provide financial and emotional support for their mother and the household. Madam Jamila, who is married with two daughters, calls her mother daily and visits once a week.

Ms Alimah gets $450 from the Government's Public Assistance Scheme and $130 from Islamic Religious Council of Singapore (Muis) each month.

However, Madam Atika does not receive any financial assistance. "I never got used to asking for help," she says.

"All this while, we've supported one another as a family. We feel that we can take care of them," adds Madam Jamila.

Looking after elderly mum

When retiree Lim Toaw Luan's elderly mother was discharged from hospital last year after fracturing her left hip, he readied the family home for her arrival.

But despite his efforts, such as installing a grab bar in the toilet, he was not prepared for the task of caring for her full time.

The 66-year-old used to work as a storekeeper in the warehousing industry and was used to coming and going as he pleased.Now, a substantial part of his life revolves around his mother, Madam Foo Eng Lan, 91. After a fall last August, she moves with difficulty.Initially after her fall, he helped her shower and go to the toilet and sometimes awoke at night to attend to her.Now that she is more mobile, she handle these aspects on her own.

But Mr Lim continues to do the housework and laundry and cooks and buys meals.

He also keeps track of her medical appointments and prepares the medicine she has to take - at least 13 tablets daily, which include medicine for her high blood pressure and diabetes, as well as iron supplements. He watches her diet, limiting fried food and curry puffs.

Although Mr Lim, who is divorced, initially found being a caregiver "very frustrating", he did not consider getting someone else to help care for his mother. He says simply: "I'm not working, so I'm free to look after her."

He is the eldest of four children. His 60-year-old bachelor brother, who lives with him in a four-room Housing Board flat in Ang Mo Kio, is a coach driver with long, irregular hours.

Mr Lim does not wish to trouble other family members, such as his two younger sisters, who visit Madam Foo every weekend, and his two adult children.

"They're busy and have their own families, their own lives to lead. I don't get them involved," he says.

Like many Asian families, Madam Foo and Mr Lim's children give them money every month. However, he handles the financial aspect of his mother's care on his own. He has an annuity and "can still afford" to pay her medical bills. He used more than $6,000 from his Medisave account to pay for the treatment of her injury.

He does not suffer from health problems himself.

An immigrant from Hainan, China, Madam Foo used to be a coffee-shop assistant and a caregiver for Mr Lim's father, who was paralysed for 18 years following an accident and died four years ago.

She has made some physical progress after her fall. Mr Lim pushes her in her wheelchair to the AWWA Rehab & Day Care Centre that is 15 minutes from their home, where she learnt to walk after her fall. She uses a walking stick for short distances.

He says he has gotten the hang of taking care of her."I don't do much for her now, though I still cannot go overseas for holidays," he adds.

Caring for husband with dementia

Housewife Tang Kwai Mei, 63, realised something was amiss in 2010 when her husband of 30 years could not press the buttons on the telephone to make a call.A year later, Mr Chin Mei Hong, 65, was diagnosed with dementia, which hampered his work performance. In 2012, he was asked to retire from his post as a dishwasher at a hotel.After losing his job of 15 years, he gradually lost the ability to speak.Having no children, Madam Tang cares for him full time in their threeroom Housing Board flat in Bukit Merah.

She has sometimes found herself telling him: "You can't talk, it's hard for me to take care of you. I don't know what you want or what you are thinking."

Besides keeping house, she does basic tasks for him, such as showering and shaving him and trimming his fingernails. She ensures he has enough water to drink and debones meat or cuts it into smaller pieces for his meals.

Without going into details, she says regarding his toilet habits, showering and eating, "If he listens to me, I'm happy", although she sometimes feels frustrated by his lack of cooperation. She gets angry, but later apologises to him as she realises it is the illness that is making him act this way.

Still, there are brighter moments, such as when he looks at her and smiles.

She also takes him to places he used to frequent, such as Chinatown and the Kwan Im Thong Hood Cho Temple in Waterloo Street.

The couple are living on their savings and receive no financial assistance.

Since October last year, they have had a free meal delivered by a voluntary welfare organisation for lunch every day.

Twice a week, from 9am to 3pm, Mr Chin goes to a Tsao Foundationrun day centre for elderly people. At the centre, Hua Mei EPICC, which refers to Elder-centred Programme of Integrated Comprehensive Care, he receives medical care and joins group activities such as exercise and dance sessions, while Madam Tang runs errands and buys groceries. She tries to save as much as possible, picking up essentials that are on sale.She has two elder sisters who occasionally call and visit, but the couple are not in touch with Mr Chin's family members. He is the youngest of seven children.

While Madam Tang sometimes confides her worries to Hua Mei staff members, she does not want to burden her family or her husband's.

"I don't want to ask people to help me, especially financially. Other people have their own families (to care for)," she says.

Being a caregiver has taken its toll. Madam Tang, who is blind in one eye and partially deaf in one ear, says she lost about 20kg in recent years from the stress of looking after him.

She has aches and pains in her back and fingers which have worsened with age, and has occasional bouts of breathlessness.

When Mr Chin had a fall in July last year, she could not lift him and had to call a neighbour to help her.

After he was hospitalised, she cried when the doctor told her to be "mentally prepared" to eventually send him to a nursing home.

"I'm scared he'll get bullied or scolded in a nursing home," she says, adding that she also worries about the cost.

"I don't dare to think about the future. I will do my best to look after him until I really can't, or until his condition deteriorates. He has only me to depend on."